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Old Wed Apr 18, 2012, 01:00 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
That's a high dosage...

Hi glitterandlace,

How long were you taking 600 mg/day?

The old standard protocol from NIH in the 1990's recommended 12mg/kg/day of cyclosporine for 6 months. For someone your weight, that would work out to 600 mg/day. The thinking back then was that more-is-better.

Some of the newer protocols recommend a maximum of 5 mg/kg/day, which is about 250 mg/day for you. The thinking now is that a lower dosage provides similar benefits with less toxicity. The newer protocols also don't set an arbitrary time for stopping the drug.

When I received ATG, my doctor was following the old protocol. I was 105 lbs and was taking 575 mg/day. I did this for a month.

I consulted with an AA expert, and he told me about the newer studies and said to lower my dosage to 5 mg/kg/day. He said to not even bother looking at my trough at this lower dosage. I metabolize cyclosporine quickly, so trough measurements aren't beneficial. My tolerance of the drug greatly improved at this lower dosage.

I really think you need to be your own health advocate with these diseases. Pay attention to how you feel, research side effects that you may be experiencing, and communicate your concerns strongly to an expert.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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